Hi everyone! I have some questions. I'm sorry that this will be so long.
First of all let me just say that I was diagnosed with RA about 8 years ago, so I know what symptoms to look for. I have a friend that lives in Vancouver, Canada. She has been having some terrible pain in her joints...ankles, knees, hips, shoulders, back, hands (knuckles & wrists). They swell and hurt. Plus she has jaw pain and has trouble opening her mouth at times. (her dentist even told her she needed to be checked for arthritis) She also says she has some tingling and numbness in her lower legs and feet and lower arms and hands and it's hard to get them to stop. She has a hard time getting out of bed in the morning because she feels stiff and hurts. Also, after sitting still for a while she has a hard time getting up and walking again. Now, seeing as how I have RA and have had both Lupus and Fibromyalgia in my family, I automatically think of those things. She obviously has some sort of problem and I can't stand to know that my friend is in this much pain. She's talked to her doctor...actually more than one doctor and they dismiss her as having mental issues rather than physical because she is manic depressive. Now, I don't know how many people you all know that are manic, but you would never know to talk to her that anything is wrong....she has herself more together than I do and most others I think. She takes medicine and stays on a strict schedule. The doctor told her that her pain was more than likely caused by her meds. She's been on her same meds for a very long time. Welbutrin for 5 years, Topamax for 4 years, and Rispertal for 3 years. The doctors barely listen to her before just telling her to take Tylenol and Mydol and come see me again next week. Now, I have never taken Mydol, but I thought that was for menstrual pain....not joint pain. She did talk them into taking blood tests for RA, but nothing showed up. From what I know about RA, you don't have to have RA factor show up in your blood to still have RA. Am I wrong? I'm not saying I know what she has, but she has some sort of problem and isn't getting any help from doctors. What advice could any of you give me to help her? Do any of you happen to know of a local Vancouver doctor or even a support group or something that could point her in a more helpful direction? From what I've heard from her, the doctors in Vancouver aren't fit to treat a cold, much less figure out something so complicated as RA, Lupus, Fibro, or anything like that. There is obviously something wrong that is making her have all of this pain and I just want to help her somehow. Any advice is appreciated. Thanks in advance.
Rischa,
I'm sorry to hear your friend is having so many problems with doctors. It sure sounds to me like RA or Fibro, or both. Her symptoms sound alot like mine. I was diagnosed with both RA and Fibro about 6 years ago. Also, my daughter is manic depressive, and NEVER complains of joint pains, never has the swelling, never has trouble getting out of bed, etc. I'm no expert in any of these fields, but I've never heard from any of my support groups for my daughter that there's any pain involved in manics. It sounds to me like the doctors are simply writing her off because of her mental condition. That's just plain wrong. I don't have any answers, but I would suggest she keep trying to find a doctor who will listen to her. Keep trying different doctors until she finds one who will be willing to help her.
I wish her luck.
Cris
Rischa,
I'm from Vancouver and have seen the top 3 rheumatologists in the Province of British Columbia, and they are all excellent, and reputable....so maybe your friend just hasn't had a proper referal yet. It helps that my family physician is amazing and totally goes to bat for our family. As soon as I started having similar symptoms to your friend plus some other stuff going on, he referred me to excellent doctors and the journey began. I've been diagnosed with RA, and Lupus arthritis. I realise it is hard to find a good family doctor but their are excellent RA's in the province some of which are doing ground breaking research in the field. Let me know if your friend needs the names of some of these doctors.
Becky
Thanks so much for replying Cris and Becky! I'll pass along all information and support to her that is given. I've also sent her the url to this thread, so she may be checking in on it. She's a bit shy, so I don't know if she'll reply.
Becky, I would love any info. that you have as far as doctors or ANYTHING really that could get her pointed in the right direction. So yes, I would very much appreciate it if you could give me the names of these doctors. You could PM me or I'll give my email addy if you'd like. I know it will be such a relief for her to find out there ARE good Rheumies and doctors in Vancouver. Like Cris said, it's just wrong how she's being treated so far. Thank you so much!
Hi Rischa,
I'll get some information together tomorrow and forward it to you. It's unfortunate that your friend has had to go through this experience without the proper support. And I agree, it is wrong how she has been treated so far. There are some great arthritis support programs in Vancouver and my current rheumatologist is actually one of the leading members of the Arthritis Society here in B.C. and very involved in research etc on Arthritis, Lupus, Fibromyalgia etc.
SO hang in there, let your friend know that here is hope, and I'll try and get some info to you in the next couple of days.
Becky
Just because a person has mental conditions that does't mean that they can't suffer from other ailments. You say your friend has medication for her condition and takes it faithfully, so that should remove the manic condition from the equation.
A lot of the people here including me, have had some dr "?", who told us that our arthritis was in our head. At the beginning that seems to be the diagnosis that they fall back on when they don't know whats wrong. It can make you doubt yourself even though you are certain something is really wrong. Arthritis can take sometime to reveal exactly what kind you are dealing with.
I'm glad there is someone in Vancouver that can be supportive of your friend. That should help her cope a little easier. Good luck and let us know how things turn out.
Barb
I am sorry your friend is having so many problems with dr.s not listening. Is it possible for her to go to another, ask for a second opinion. My dr kept pushing me off when I was complaining about the pain, at the time I was diagnosed with ra, I kept telling them the pain was getting worse but they kept insisting that my ra was getting better. I told them my hands were so hot that you could cook an egg in them, they said it was my hypothyroid that was doing that. Tehn a new feamle dr came into the picture she insisted i have my hands xrayed and then she insisted I was sent to an rd who diagnosed me not only with ra, but with pa and oa also. He told me that the pa has probably been active as long as my ra has been if not longer so we are talking 4 to 6yrs!!!! Please let us know what happens for your friend, I hope she can find someone that will listen to her take care and good luck. MemeThank you all so much for your support. I know she'll appreciate it and I do, too.
Meme, she's already seen 2 doctors that have brushed her off as "mental". That's why she's so frustrated and doesn't know where to turn.
Dyna, yes, she does take her meds faithfully and has a strict routine for sleep, too. You can almost set your watch by her bed time.
Becky, thanks again for letting me know there are docs in Vancouver that might be able to help. I'll keep a close check on my inbox.
I'm new to this group. I recently (since late November) started having joint pain and stiffness. At first I figured it was due to my new job (which is very physical - as opposed to my old office job), but the pain did not subside, and just got worse. It started with pain and stiffness in the hands and feet - especially in the morning, or after sitting for a while. Now I have it in the knees, and the past couple of weeks in the elbows. As a matter of fact, I have pain in the back of my ankles that starts to burn sometimes when I'm on my feet doing things.
Rischa's email struck a chord with me because her friends symptoms sound very similar to mine. I also have had pain in my left jaw (it hurts when I open my mouth more than just "alittle"), but I didn't connect that with the other symptoms.
I went to my gp finally about 3 weeks ago and he ordered bloodwork to check for the RA factor, lupus, and lyme disease. I had my follow-up with him about two weeks later. He seemed to have no recollection of the symptoms I told him I had two weeks prior, and informed me that "all of the bloodwork was negative, so you don't have any of the conditions I tested you for". He made me feel as though it was all in my head.
I also noticed low grade fevers off and on. A few months before these symptoms started I went to this same doctor for hair loss and for being so tired all the time -- I felt as if a truck ran me over. When I get up in the morning, or get up after sitting for a while, I look like an 80 year old woman (I'm 42). For a while I had a hard time turning a doorknob, and opening jars. The last couple of weeks I've noticed that my grip is a little better than it was and that the pain and stiffness in the morning isn't lasting quite as long, but it's still there, and as I said before, I've started getting additional pains (ankles, elbows, etc.).
I made an appointment for the 29th of this month with a Rheumatologist who was highly recommended by a friend - hopefully he can shed some light on some of this. In the meantime, any thoughts from anyone out there would be greatly appreciated.
Lisa
Rischa,
I haven't forgotten, I've been pretty sick, but see my specialist tomorrow, and will have all the numbers and info to pass on after that.
becky
GOOD NEWS! My friend's doctor finally called to talk to her mental health doctor to see if it was possible that her meds were causing her joint problems. He said without a doubt that it wasn't her meds. Which she had already told him, but he wouldn't listen. Anyway, she's awaiting an appointment with a "joint doctor" she said, so that's a step in the right direction! Yay! Thank you all so much for your support!
BTW, Becky, I'm sorry to hear that you've been sick. How was your doc appointment?
Hey Rischa,
Appointment wasn't that great, the inflammation in my joints has gotten out of control and my rheumy is completely mystified as to why the treatments we've tried so far haven't worked. So we are doing some interesting medication adjustments in the coming days to see if we can't work something out. ANYWAYS...enough about miserable old me...I'm turning 36 tomorrow and feel 90.
I'm curious what doctor your friend has been referred to. I'll give you the name of three excellent Rheumatologists and their numbers:
Dr. Barry Koehler 604-273-8085 (Richmond, British Columbia)
Dr. Alice Klinkhoff 604-871-4536 (Vancouver, British Columbia)
Dr. Andrew Chalmers 504-871-4536 ( Vancouver, British columbia)
Dr. Klinkhoff and Dr. Chalmers work out of the same clinic in downtown Vancouver, right across from Vancouver General Hospital. Your friend would need to ask her doctor to refer her to one of these. So if she isn't happy with her current referral she should try one of these. I'll send a bit more information with a website that all of these doctors write articles for later.
Take care
Becky & nbsp;